Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for June 2019

Skin cancer complication of MF sarcomatoid SCC

The skin cancer is a sarcomatoid SCC, so life gets more uncertain, as it’s a rare complication of an already rare disease. Excision was OK, with clear...

The skin cancer is a sarcomatoid SCC, so life gets more uncertain, as it’s a ra...

Rachelthepotter

•5 years ago

7 Replies

Platelets rising...

Since May 2018 my husband’s platelets have been rising and are now at 908. Neutrophils are also a bit high at 7.9 and Haematocrit at 0.49. All very technical...

Since May 2018 my husband’s platelets have been rising and are now at 908. Neutr...

MarybellM

•5 years ago

5 Replies

Small update after my wife's first haem appointment...

Hi all, hope everyone is doing well. So the 10th of June finally got here after all the waiting and worrying and we finally got to go see the haematologist at...

Hi all, hope everyone is doing well. So the 10th of June finally got here after...

ItsJustMee

•5 years ago

9 Replies

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My Bone Marrow Biopsy result states that the morphologic findings are "somewhat suspicious" of a chronic MPN.

Anyone out there also had that on their BMB? "Somewhat suspicious" is less than convincing. Is this typical that they state it like this?

Anyone out there also had that on their BMB? "Somewhat suspicious" is less than...

Jschwab

•5 years ago

12 Replies

Angioplasty with PV JAK2+

Hi again, I was diagnosed with PV JAK2+ about 8 weeks ago, leading up to this I had a blood clot in my toe so also had to see a vascular surgeon, I had a CT...

Hi again, I was diagnosed with PV JAK2+ about 8 weeks ago, leading up to this I ...

Chez1947

•5 years ago

6 Replies

Recently diagnosed with ET

Hi, a few weeks ago I was diagnosed with ET (JAK 2 positive). This was a huge shock, particularly as it's so rare! I started on 500mg of Hydroxycarbamide but...

Hi, a few weeks ago I was diagnosed with ET (JAK 2 positive). This was a huge sh...

Trueblue8

•5 years ago

29 Replies

high heart rate

I have PV with Jak 2 positive. Have been taking 1000 mg since 4 months. My heart rate increased from 90 to 115 during this period. Is this related to hydrea

I have PV with Jak 2 positive. Have been taking 1000 mg since 4 months. My heart...

ramnik

•5 years ago

8 Replies

Vomiting and hydroxy

Good morning. I have got diahorea and vomiting and feel awful I was wondering if I should take my hydroxy or not due to being sick. Has anyone else...

Good morning. I have got diahorea and vomiting and feel awful I was won...

Pippa63

•5 years ago

6 Replies

Dry cough

Hello I read a few days ago about someone having a breathing problems linked to Interferon. I was wondering what this felt like. I’m 3 months into taking...

Hello I read a few days ago about someone having a breathing problems linked to...

Charlieapple2018

•5 years ago

1 Reply

ET CALR+ & Venesection?

Hi I had my 4 monthly check up this week and my consultant was concerned about my haematocrit and to review it in 6 weeks with a possible venesection. I...

Hi I had my 4 monthly check up this week and my consultant was concerned about m...

Jonnymitts

•5 years ago

10 Replies

Hydroxyurea or not?

Hi everyone. I have been reading your posts for several months and need to introduce myself. I was diagnosed with PV Jak2 at age 65 and am now 73. Platelets...

Hi everyone. I have been reading your posts for several months and need to intro...

falconered53

•5 years ago

23 Replies

Long time treatment

Hi just to introduce myself I suffer from ET, It was diagnosed in 1987 and I’ve been on treatment ever since, I have been on Hydroxycarbamide daily for the...

Hi just to introduce myself I suffer from ET, It was diagnosed in 1987 and I’ve ...

Chemo01

•5 years ago

26 Replies

Scientists make discovery in link between obesity and cancer

Yesterday I came upon a cartoon that grabbed my attention. It seems that in obese people certain immune cells are actually clogged with fat and therefore can...

Yesterday I came upon a cartoon that grabbed my attention. It seems that in obes...

clubdino

•5 years ago

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Contrary to popular belief, you don't have to have a platelet count above 1 million to get aquired von Willebrand. Especially in PV.

It has always been my understanding that testing for acquired Von Willebrand was not recommended until you reached a platelet count of 1 million. But after...

It has always been my understanding that testing for acquired Von Willebrand was...

clubdino

•5 years ago

2 Replies

Myelofibrosis

I have been considering willing my body to science. Does anyone know if the medical community is doing any research on MF?

I have been considering willing my body to science. Does anyone know if the me...

USSpurdy

•5 years ago

5 Replies

Normal people have circulating T-cells that have recognized the CALR mutation as an invader to the immune system and destroyed it

This study has demonstrated that normal people have been exposed to the CALR mutation but their immune system recognized the enemy and destroyed it. The study...

This study has demonstrated that normal people have been exposed to the CALR mut...

clubdino

•5 years ago

17 Replies

Coach Trip

Our local Women’s Institute hires a coach and does a trip to visit lovely places such as Stratford upon Avon and Worcester. There is a coffee stop on the way...

Our local Women’s Institute hires a coach and does a trip to visit lovely places...

Borage

•5 years ago

6 Replies

Bloodshot eyes

Hello all, Hope you’re all doing ok. My platelet count is currently at 1450, it has been rising steadily over the months since I asked to try coming off...

Hello all, Hope you’re all doing ok. My platelet count is currently at 1450, i...

stevenjust

•5 years ago

13 Replies

JUST CHECKING LADIES

JUST CHECKING ALL MY ET SISTERS ARE OK

lizzziep

•5 years ago

11 Replies

Blood sisters

I count myself very lucky to have three such lovely ladies to share my MPN journey with. We met one year ago today 😍

I count myself very lucky to have three such lovely ladies to share my MPN journ...

Sand-Dancer

•5 years ago

30 Replies

Vitamin K2.

I have ET JAK2+ Can I take Vit K2 or will it affect platelets???

130396

•5 years ago

14 Replies

newly diagnosed ET jak 2+

HI this is my first post as I'm new to this forum I am newly diagnosed with ET jak 2 + 3 weeks ago at the age of 52was told this is very rare at my age I live...

HI this is my first post as I'm new to this forum I am newly diagnosed with ET ...

Kazzaa

•5 years ago

16 Replies

Chest pain with pv

Hi all Over the last two weeks I have developed chest pain accompanied by dizzy spells. I have gone to the hospital twice and had ecg,s and blood tests which...

Hi all Over the last two weeks I have developed chest pain accompanied by dizzy ...

Brian27

•5 years ago

5 Replies

ET and organ donation

This issue was troubling me and although there were some posts on here, they were all a few years old, so today I rang the NHS Blood and Transplant Service....

This issue was troubling me and although there were some posts on here, they wer...

mjn500

•5 years ago

4 Replies

Fresh Update on Manifest Trial (June 3, 2019)

https://www.globenewswire.com/news-release/2019/06/03/1863298/0/en/Interim-Data-for-CPI-0610-in-MANIFEST-Clinical-Trial-Showed-Signals-of-Clinical-Activity-in-M

https://www.globenewswire.com/news-release/2019/06/03/1863298/0/en/Interim-Data-...

Aneliv9

•5 years ago

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MPN Voice Nottingham Support Group change of date for June 2019 meeting

The June meeting of the MPN Voice Nottingham Support Group will now take place on Wed 26 June not Wed 19 June. The meetings take place in: Clinical...

The June meeting of the MPN Voice Nottingham Support Group will now take place ...

Mazcd

Partner•5 years ago

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HU Journey

Well after an initial good start to using this medication I've had a bit of a bumpy ride. I'm ok now but me and worry are never far from each other. My dose...

Well after an initial good start to using this medication I've had a bit of a bu...

heathermc

•5 years ago

10 Replies

Does anyone remember this info that has been shared a few times before.

Hi, I read a post I think from Maz some time ago , it was either info or an article which covered issues with different effects of MPN within the body ie...

Hi, I read a post I think from Maz some time ago , it was either info or an arti...

lindyloulou

•5 years ago

12 Replies

A funky blood picture...

Hi, I am Uzza, just diagnosed with JAK2 after ten years or more of increasing symptomology.

Hi, I am Uzza, just diagnosed with JAK2 after ten years or more of increasing sy...

Uzza

•5 years ago

17 Replies

Newbie told by my consultant that my symptoms aren't related to ET. Hmmm 🤔...

Hi, I was recently diagnosed with jak 2 positive ET and placed on low risk aspirin only regimin (I am 45 years old). I've been feeling fairly positive about...

Hi, I was recently diagnosed with jak 2 positive ET and placed on low risk aspi...

Turtles-all-the-way

•5 years ago

45 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for June 2019

Skin cancer complication of MF sarcomatoid SCC

Platelets rising...

Small update after my wife's first haem appointment...

My Bone Marrow Biopsy result states that the morphologic findings are "somewhat suspicious" of a chronic MPN.

Angioplasty with PV JAK2+

Recently diagnosed with ET

high heart rate

Vomiting and hydroxy

Dry cough

ET CALR+ & Venesection?

Hydroxyurea or not?

Long time treatment

Scientists make discovery in link between obesity and cancer

Contrary to popular belief, you don't have to have a platelet count above 1 million to get aquired von Willebrand. Especially in PV.

Myelofibrosis

Normal people have circulating T-cells that have recognized the CALR mutation as an invader to the immune system and destroyed it

Coach Trip

Bloodshot eyes

JUST CHECKING LADIES

Blood sisters

Vitamin K2.

newly diagnosed ET jak 2+

Chest pain with pv

ET and organ donation

Fresh Update on Manifest Trial (June 3, 2019)

MPN Voice Nottingham Support Group change of date for June 2019 meeting

HU Journey

Does anyone remember this info that has been shared a few times before.

A funky blood picture...

Newbie told by my consultant that my symptoms aren't related to ET. Hmmm 🤔...

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